Kaye Koyano, 82, and Ethan Brayman, 3, create a holiday wreath together at the Alzheimer’s Activity Center & Rosa Elena Childcare Center in San Jose on Oct. 25. As of Jan. 1, Medicare will cover cognitive and functional assessments and care planning for people living with Alzheimer’s disease
Gary Reyes — Bay Area News Group file

EARLY SIGNS AND SYMPTOMS OF ALZHEIMER’S

3. Difficulty completing familiar tasks at home, at work or at leisure.

4. Confusion with time or place.

5. Trouble understanding visual images and spatial relationships.

6. New problems with words in speaking or writing.

7. Misplacing things and losing the ability to retrace steps.

8. Decreased or poor judgment.

9. Withdrawal from work or social activities.

10. Changes in mood and personality.

Source: Alzheimer’s Association

It took years for Karen Smyth’s elderly father, Lorne Smyth, to finally be diagnosed with Alzheimer’s as his memory slowly slipped away. And when the family learned the heartbreaking news, they didn’t know where to begin to plan for his care.

“It was like I was stumbling through it,” recalled the Mountain View resident and senior marketing manager at a Silicon Valley tech company.

After years of pressure from patient advocate groups, starting this month, Medicare will reimburse doctors for the time it takes to test patients with cognitive impairment such as Alzheimer’s disease or dementia, at any stage, and offer information about care planning.

While that may seem odd to many who might assume that doctors — mostly primary care physicians — would already be doing this, that’s not always the case.

“Our biggest problem with this disease is that families chase a diagnosis — sometimes for years,” said Ruth Gay, chief public policy officer at the Alzheimer’s Association of Northern California and Northern Nevada, the largest U.S. chapter of that national organization.

The nonprofit, which led the recent effort, is dedicated to advancing research to end Alzheimer’s and dementia while enhancing care for those living with the disease.

NUMBERS GROW

According to the association, more than 5 million Americans are living with Alzheimer’s, and as many as 16 million will have the disease in 2050.

In California, 610,000 people age 65 and older have been diagnosed with the Alzheimer’s, the fifth leading cause of death in the state.

And the cost of caring for those with the disease and other types of dementia is soaring in the U.S.: estimated to total $236 billion in 2016, it is projected to increase to $1.1 trillion by mid-century.

But many patients may not know they have it: the association says only about 50 percent of Americans are being diagnosed.

The problem, experts say, is that many doctors don’t take the time needed to test patients for Alzheimer’s disease. And even ones who do make a diagnosis can be reluctant to deliver the bad news about the incurable brain disorder that will only get worse, and carries a stigma.

Gay said that some doctors do recognize the need to test someone for memory loss, and may even refer the family to a neurologist for further diagnosis.

But this new Medicare billing code, she said, will provide more incentive to primary care doctors to take the time for more evaluation and care-coordination.

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“That is the unique thing in this reimbursement,” said Gay.

At the Stanford Center for Memory Disorders, which is working to fight age-related cognitive decline, neurologist Dr. Geoffrey Kerchner applauds the new regulation that he believes will help many primary care doctors who are the gate-keepers for most of these patients.

“It shows a commitment of our government to the big problem that Alzheimer’s disease and cognitive impairment represent in our aging population,” said Kerchner, who sits on the board of the local chapter of the Alzheimer’s Association. He noted that one-half to one-third of Americans over age 85 have Alzheimer’s.

BETTER OUTCOMES

The neurologist and others agree that an early and documented diagnosis, when coupled with access to care planning services, leads to better outcomes for individuals with Alzheimer’s as well as their caregivers.

“Once a person hits the age of 65 or 70, primary care doctors should be doing screening tests on a regular basis, either annually or at least every couple of years,” said Kerchner.

The reason: It’s sometimes possible to notice evidence of cognitive problems even before the person realizes it themselves.

“Some critics may argue, “Why does it matter? There is nothing you can do anyway,” said Kerchner, who also serves as a medical director at Genentech, which is researching new drugs that may be able to slow down or even halt the disease.

“My answer to that is that we are on the brink of a time where there are going to be new drugs available to treat Alzheimer’s disease,” said Kerchner, who offered a timeline of around five years.

The catch, he said, is that the research so far suggests that these drugs are only going to be effective in the early stages of the disease, when the symptoms are the most mild.

“That means the primary care doctors really need to be attuned to the those mild cognitive problems,” said Kerchner.

Still, many doctors aren’t prepared to help their patients take advantage of the new Medicare rule, said George Vradenburg, co-founder and chairman at UsAgainstAlzheimer’s, another national group dedicated to finding and funding a solution to Alzheimer’s.

“The problem has been that more front-line physicians are not generally trained in the geriatric arts,” Vradenburg said. So they will first need to learn how to assess these patients before referring them to neurologists or to care plans.”

DIAGNOSING ESSENTIAL

At the California Academy of Family Physicians, executive vice president Susan Hogeland said that accurately diagnosing and coordinating care for these patients “is essential.” And many of the group’s members, she said, “provide excellent, compassionate care” to people suffering such declines, and to their loved ones as well, since the diagnosis affects an entire family.

“We look forward to educating family physicians about Medicare’s new coverage to support them in providing this much needed care,” Hogeland said.

A spokesperson for the Centers for Medicare & Medicaid Services said the federal government’s new rule did not include anything about educating doctors about the process, nor did it project how much the new rule will cost Medicare.

In California, the Alzheimer’s Association said it is working with the state to train physicians.

Smyth, whose father died of Alzheimer’s at age 85 in 2014, said she is grateful for the new rule, and hopes that doctors will take the time to read it and learn how to apply it to those patients.

“Anything that can give people an ounce more information about the need for care planning, and not go back to that place I was — that’s huge,” she said.

EARLY SIGNS AND SYMPTOMS OF ALZHEIMER’S

1. Memory loss that disrupts daily life.

2. Challenges in planning or solving problems.

3. Difficulty completing familiar tasks at home, at work or at leisure.